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  • What Is CF?
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    ABOUT CYSTIC FIBROSIS

    Learn about cystic fibrosis, a genetic disorder that affects the lungs, pancreas, and other organs, and how to treat and live with this chronic disease.

    Role of Genetics in CF

    CF is a rare genetic disease found in about 30,000 people in the U.S. If you have CF or are considering testing for it, knowing about the role of genetics in CF can help you make informed decisions about your health care.

    CF Genetics: The Basics
    CF Mutations Video Series
    Find Out More About Your Mutations
    Personalized Medicine
    Types of CFTR Mutations

    DIAGNOSIS

    If you or your child has just been diagnosed with cystic fibrosis, or your doctor has recommended testing for CF, you may have many questions.

    TESTING FOR CYSTIC FIBROSIS

    Diagnosing CF is a multistep process. A complete diagnostic evaluation should include a newborn screening, a sweat chloride test, a genetic or carrier test, and a clinical evaluation at a CF Foundation-accredited care center.

    Carrier Testing for Cystic Fibrosis
    CFTR-Related Metabolic Syndrome (CRMS)
    How Babies Are Screened in IRT-Only vs. IRT-DNA States
    Newborn Screening for CF
    Sweat Test
  • Life With CF
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    Caring for a Child With CF

    Raising a child with cystic fibrosis can bring up many questions because CF affects many aspects of your child’s life. Here you’ll find resources to help you manage your child’s daily needs and find the best possible CF care.

    CF Infant Care
    PARENT AND GUARDIAN GUIDANCE

    Working With Your Child's School

    Individualized Education Programs (IEPs) and 504 Plans
    School Transitions for People With CF and Their Families

    Daily Life

    Living with cystic fibrosis comes with many challenges, including medical, social, and financial. By learning more about how you can manage your disease every day, you can ultimately help find a balance between your busy lifestyle and your CF care.

    Adult Guide to Cystic Fibrosis

    CF and School

    For Teachers
    Managing My CF in College
    CYSTIC FIBROSIS-RELATED DIABETES

    Emotional Wellness

    Procedural Anxiety
    Substance Misuse
    Depression
    Coping While Caring for Someone With Cystic Fibrosis
    Anxiety
    Working With Your Care Team

    Fitness and Nutrition

    Fitness
    Nutrition and Your Digestive System

    Germs and Staying Healthy

    CF and Coronavirus (COVID-19)
    How Can You Avoid Germs
    What Are Germs?

    Traveling With CF

    Preparing to Travel
    In Transit and at the Destination
    Special Considerations While Traveling Abroad

    Transitions

    People with CF are living longer, healthier lives than ever before. As an adult with CF, you may reach key milestones you might not have considered. Planning for these life events requires careful thought as you make decisions that may impact your life.

    Managing My CF in College

    Accommodations for College
    Scholarships and Financial Aid

    Reproductive Health and Fertility

    Contraception and Protection
    How Does CF Affect the Female Reproductive System?
    How Does CF Affect the Male Reproductive System?
    Sex and CF: Some Practical Advice

    Family Planning and Parenting With CF

    Making Your Family Planning Decisions
    Pregnancy and CF
    Alternative Ways to Build a Family
    Parenting as an Adult With CF

    Colorectal Cancer and CF

    About Colorectal Cancer
    Preparing for a Colonoscopy When You Have CF
    What Happens After My Colonoscopy?

    Treatments and Therapies

    People with cystic fibrosis are living longer and more fulfilling lives, thanks in part to specialized CF care and a range of treatment options.

    Airway Clearance

    Active Cycle of Breathing Technique
    Airway Clearance Techniques
    Autogenic Drainage
    Basics of Lung Care
    Chest Physical Therapy
    Coughing and Huffing
    High-Frequency Chest Wall Oscillation
    Positive Expiratory Pressure

    Clinical Trials

    Clinical Trials 101
    What to Consider When Joining a Clinical Trial
    After the Clinical Trial: What’s Next?

    Lung Transplantation

    Being Referred and Evaluated
    Surgery, Recovery, and Life Post-Transplant
    Waiting for the Transplant
    What Is a Lung Transplant?
    What to Consider Regarding a Lung Transplant

    Medications

    Antibiotics
    Bronchodilators
    CFTR Modulator Therapies
    Mucus Thinners
    Nebulizer Care at Home
    Vascular Access Devices PICCs and Ports

    Partnerships for Sustaining Daily Care

    More Than Taking Medications
    The Partnerships for Sustaining Daily Care Initiative

    Treatment Plan

    CF Care Center Visits
    Managing Your Treatment Plan
    Partnering With Your Care Team
    Trikafta
  • Care
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    Care Centers

    Cystic Fibrosis Foundation-accredited care centers provide expert care and specialized disease management to people living with cystic fibrosis.

    CF CARE CENTER finder

    We provide funding for and accredit more than 120 care centers and 53 affiliate programs nationwide. The high quality of specialized care available throughout the care center network has led to the improved length and quality of life for people with CF.

    Clinical Care Guidelines

    The Cystic Fibrosis Foundation provides standard care guidelines based on the latest research, medical evidence, and consultation with experts on best practices.

    Age-specific Care Guidelines

    Adult Care Clinical Care Guidelines
    Infant Care Clinical Care Guidelines
    Management of CRMS in First 2 Years and Beyond Clinical Care Guidelines
    Preschool-Aged Care Clinical Care Guidelines
    CFTR Modulator Therapy Care Guidelines

    Diagnosis Care Guidelines

    CF Diagnosis Clinical Care Guidelines
    Newborn Screening Clinical Care Guidelines
    Sweat Test Clinical Care Guidelines

    Infection Prevention and Control Care Guidelines

    Allergic Bronchopulmonary Aspergillosis Clinical Care Guidelines
    Eradication of Initial P aeruginosa Clinical Care Guidelines
    Infection Prevention and Control Clinical Care Guidelines
    Nontuberculous Mycobacteria Clinical Care Guidelines

    Nutrition and GI Care Guidelines

    Colorectal Cancer Screening Clinical Care Guidelines
    Enteral Tube Feeding Clinical Care Guidelines
    Nutrition in Children and Adults Clinical Care Guidelines
    Nutrition in Pediatrics Clinical Care Guidelines
    Pancreatic Enzymes Clinical Care Guidelines
    Vitamin D Deficiency Clinical Care Guidelines

    Other CF-related Conditions Care Guidelines

    Bone Disease in CF Clinical Care Guidelines
    Cystic Fibrosis-Related Diabetes Clinical Care Guidelines
    Liver Disease Clinical Care Guidelines

    Respiratory Care Guidelines

    CF Airway Clearance Therapies Clinical Care Guidelines
    Chronic Medications to Maintain Lung Health Clinical Care Guidelines
    Guidelines for the Care of Individuals With Advanced CF Lung Disease
    Lung Transplant Referral Guidelines
    Pneumothorax and Hemoptysis Clinical Care Guidelines
    Pulmonary Exacerbations Clinical Care Guidelines
    SCREENING & TREATING DEPRESSION & ANXIETY GUIDELINES
    Best Practices in the Management of the Gastrointestinal Aspects of CF

    Clinician Resources

    As a clinician, you’re critical in helping people with CF maintain their quality of life. We’re committed to helping you partner with patients and their families by providing resources you can use to improve and continue to provide high-quality care.

    Clinician Awards

    Clinician Career Development Awards
    Clinician Training Awards
    Mutation Analysis Program

    Network News

    Network News: February 2020
    Network News: NACFC 2019
    Network News: August 2019
    Network News: May 2019
    Network News: Previous Issues

    Partnerships for Sustaining Daily Care

    As part of the Cystic Fibrosis Foundation's mission to help improve the lives of people living with cystic fibrosis, the PSDC initiative taps the CF community to inform key efforts to support the management of daily care.

    MORE THAN TAKING MEDICATIONS
    The Partnerships for Sustaining Daily Care Initiative
    Success With Therapies Research Consortium

    Your CF Care Team

    Your cystic fibrosis care team includes a group of CF health care professionals who partner with you to provide specialized, comprehensive CF care.

  • Assistance Services
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    About Compass

    Many people living with cystic fibrosis and their families face complicated issues related to getting the care they need. Cystic Fibrosis Foundation Compass makes sure that no one has to do it alone.

    What Is Compass?
    Meet the Compass Team

    How Compass Helps People With CF and Their Families

    CF Foundation Compass is a service that helps people with CF and their families with navigating insurance options, connecting to legal information and experts, finding available financial resources, and tackling other life issues.

    How Compass Can Help

    Understanding Insurance

    Medicaid
    Medicare
    Your Insurance Plan
    Social Security Disability
    Know Your Legal Rights

    Financial Matters

    Financial Planning
    Finding Financial Assistance
    Postsecondary Transitions
    Other Life Issues
    Disaster and Emergency Preparedness Plan

    How Compass Can Help CF Care Teams

    CF care team members are paramount in providing highly specialized care to people living with CF. CF Foundation Compass can help by serving as a strategic ally for care teams, so team members can focus on their patients’ care.

    Connect With Compass

    CF Foundation Compass can help you navigate insurance, financial, legal, and other issues you are facing. Use this online form to start your conversation with a Compass case manager today.

  • Research
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    About Our Research

    The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for CF and supports a broad range of research initiatives to tackle the disease from all angles.

    Path to a Cure
    Research We Fund
    RESEARCH OVERVIEW
    RESEARCH MILESTONES
    Track Record of Progress
    New Developments in Clinical Research
    Cystic Fibrosis Foundation Therapeutics Lab

    Developing New Treatments

    The CF Foundation offers a number of resources for learning about clinical trials and treatments that are being developed to improve the treatment of cystic fibrosis.

    CFTR Modulator Types

    Clinical Trials

    Clinical Trials 101
    What to Consider When Joining a Clinical Trial
    After the Clinical Trial: What’s Next?
    CLINICAL TRIAL FINDER
    DRUG DEVELOPMENT PIPELINE

    Drug Development Pipeline 101

    About the Drug Development Pipeline
    How Drugs Get on the Pipeline
    Trailblazer CF Clinical Trials Campaign

    Research Into the Disease

    Our understanding of CF continues to evolve as scientists study what causes the disease and how it affects the body. These insights drive the development of new and better treatments and bring us one step closer to a cure.

    Research Into CF Complications

    Gastrointestinal Issues and Cystic Fibrosis-Related Diabetes
    Infection Research Initiative
    Infections
    Inflammation
    Mucus

    Restore CFTR Function

    Basics of the CFTR Protein
    CFTR Modulator Types
    Exploring Treatments for Nonsense and Rare Mutations
    Gene Therapy for Cystic Fibrosis
    Gene Editing for Cystic Fibrosis
    Gene Delivery for Cystic Fibrosis Therapy
    Stem Cells for Cystic Fibrosis Therapy

    Role of Genetics in CF

    CF Genetics The Basics
    CF Mutations Video Series
    Find Out More About Your Mutations
    Personalized Medicine
    Types of CFTR Mutations

    Researcher Resources

    Researchers, supported by the CF Foundation, have made tremendous advances to improve the health and quality of life of people with CF. We are committed to providing the tools and resources you need to continuously build upon this work.

    Awards and Grants

    Applicant Resources
    Career Development Awards
    COVID-19 FAQs for Applicants and Awardees
    Funding Opportunities
    Research Awards
    Training Awards
    CF BASIC RESEARCH CENTERS
    Community Input into Research
    Industry Funding Opportunities
    National Resource Centers

    North American CF Conference

    2020 NACFC
    Carolyn and C. Richard Mattingly Leadership in Mental Health Care Award
    Mary M. Kontos Award
    Paul di Sant’Agnese Distinguished Scientific Achievement Award
    Quality Care Awards
    Richard C. Talamo Distinguished Clinical Achievement Award
    Robert J. Beall Therapeutics Development Award

    Patient Registry

    2019 Patient Registry Annual Data Report
    2019 Cystic Fibrosis Foundation Patient Registry Snapshot
    Care Center Data
    Understanding Changes in Life Expectancy

    Research Consortia

    CF Biomarker Consortium
    CFTR 3-D Structure Consortium
    CFTR Folding Consortium
    Epithelial Stem Cell Consortium
    Mucociliary Clearance Consortium
    NTM Consortium
    SUCCESS WITH THERAPIES RESEARCH CONSORTIUM

    Therapeutics Development Network

    TDN Coordinating Center Study Support
    TDN Womens Health Research Working Group
    Working With the TDN

    Tools and Resources

    Antimicrobial Tools and Resources
    Bioinformatics Tools for CF
    Cell Model Resources
    CFTR Antibodies Distribution Program
    CFTR Assays
    CF Foundation Biorepository
    CFTR Chemical Compound Program
    CFTR Protein Domains
    Patient Registry Data Requests
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Other Life Issues

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Other Life Issues

  • Transplant Support
  • Living Expenses
  • Transportation and Travel
  • Funeral Assistance
  • Emotional Wellness
  • Genetic Testing
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Cystic Fibrosis Foundation Compass can be a partner in managing your disease and everyday challenges.

Transplant Support

Lung transplantation is expensive, even for people with health insurance, so having a financial plan is critical. It is also a milestone in a person's life. With any milestone, many questions, concerns, and issues may arise. Compass can be your partner through the process by helping you locate a transplant center, understand transplant costs, plan for housing and transportation during your transplant, find financial assistance for transplant medications, and plan for caregiver education and support. 

A transplant does not mean a person's journey with CF is over. Compass is here for those post-transplant in helping to tackle other challenges that may be faced after surgery and beyond.

Living Expenses

Life comes with many expenses related and unrelated to cystic fibrosis. Whether it's utility payments, home repair, or having enough food on the table, there may be resources that help cover certain costs. Compass can help you identify those resources locally while also finding ways to lower other costs associated with your care to free up funds for these everyday costs.

Monthly Bills

If you are behind on your bills for living expenses, Compass may be able to point you toward resources to help. Case managers can help you find out exactly how much you owe and work with you to make a plan for dealing with financial issues related to living expenses. Along with contacting the utility company, Compass can also find grants that can help cover costs to help you with the issue as quickly as possible.

Food

If you have trouble getting enough food or if affording groceries is a challenge, you may be able to get help. Communities across the country have resources and programs that have discounts on groceries, food boxes, and food delivery. You may also want to talk with your CF care center social worker about what resources might be available, such as your local Feeding America food bank, that can help supplement your diet.

Home Improvement

If you need help with a home modification or home repair, Compass case managers can spend the time to look for local or state resources that can provide financial assistance.

Taxes

Many states have programs that offer free help to people under a certain income, persons with disabilities, and limited-English-speaking taxpayers who need assistance preparing their tax returns.

Transportation and Travel

Getting to and from your CF care center is difficult if you have trouble with transportation, such as needing gas, a reliable vehicle, or money for parking fees. You can see if your insurance plan can help by contacting the plan's member services to see if transportation is a benefit. In most cases you will need to call and schedule your trip at least 48 hours in advance, and there may be a distance limit. If transportation is not available through your insurance plan, there may be local and county programs that can provide transportation services or vouchers for public transportation. In rarer instances, there may be other local organizations that can assist with gas cards or car repairs.

Funeral Assistance

Losing a loved one comes with emotional and financial tolls. There may be some financial help through Social Security, Community Action, local private foundations, or even religious organizations and houses of worship. While financial programs and local resources may be limited, Compass can do the research for you during this difficult time so you can focus on your loss and not the financial burden.

Emotional Wellness

People with CF as well as their family members often need help coping with the disease and its impact. Most insurance plans offer mental and behavioral health coverage, with in-network health care providers that specialize in mental health services. There may also be specialized support groups, wellness programs, and other resources available in your local community. Compass case managers can help research your mental health benefits under your current plan as well as search for available programs and resources in your area.

Genetic Testing

Genetic (or carrier) testing plays a key role in the diagnosis of cystic fibrosis and can help guide treatment decisions, but insurance coverage varies, so it can be expensive.

Many insurance plans will cover the cost of a genetic test. You can call your insurance company to see if this is a covered benefit and to learn of any copays or coinsurance due for the test. If your insurance does not cover the cost of a genetic test, a Compass case manager can help you learn more about low-cost national carrier testing resources.

The Mutation Analysis Program (MAP) provides free genetic testing to people with a cystic fibrosis diagnosis to help identify their CF gene mutations. To learn more about the MAP program please contact your accredited cystic fibrosis care center.

Whatever life issue you are facing, Compass case managers are here to listen and help you navigate through it. If there is an issue that we cannot tackle, we can help identify and connect you with organizations that may be able to. Contact Compass at 844-COMPASS (844-266-7277) Monday through Thursday, 9 a.m. until 7 p.m. ET and Friday, 9 a.m. until 3 p.m. ET, or email us at compass@cff.org. You don't have to do it alone.

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